The white house with a psoriasis ribbon floating behind it

Capitol Hill Day 2024

Recently, I had my 4th trip to Washington, D.C. to meet with congressional members. I was with the National Psoriasis Foundation. I love advocating for psoriasis. It gives my life purpose in living with this condition. There is power in telling my story.

I was paired with a medical student that also has psoriasis and is attending a college in my state of Louisiana. He is a 4th year medical student working his way to becoming a dermatologist. I was also paired with a 3rd year medical student attending school in Arkansas. This was the first time for both to attend Capitol Hill Day. They both brought an amazing knowledge of not only living with psoriasis but also what they had knowledge of in the medical field.

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Preparing for the meetings

Since I had previous experience of what this day would entail, they both looked at me to be the leading force in the meetings we would have that day. We had 7 meetings to attend on the Hill. 4 Congressional members from Louisiana and 3 members from Arkansas. All of the meetings were important of course but one meeting in particular was very important. That meeting was with the current Speaker of the House Mike Johnson from Louisiana. We would be going into the Capitol for that meeting.

Usually, the meetings are in the Senate and House buildings. I only know of one group that got to go into the Capitol before us. We were excited but also a little nervous for that meeting. However, the National Psoriasis Foundation Government Relations team made sure we were fully trained for each meeting. Since there were 3 asks we would be talking about, the 3 of us divided each issue based on our experience and strength.

Our meetings

The first meeting of the day started with Representative Steve Scalise who is the Majority Leader of the House of Representatives. We were a bit nervous, but the meeting went well. After the meeting the three of us discussed what went well and what we needed to change for the other meetings.

From there, we met with Senator John Kennedy (Louisiana), Senator Bill Cassidy (Louisiana), Senator John Boozman, (Arkansas), Representative French Hill (Arkansas), and Representative Bruce Westerman (Arkansas). The last meeting of the day was with Speaker of the House Mike Johnson. It was a full day but also an amazing day. Each meeting apart from one went well. We met with each person’s health staffer. Most were very attentive to what we were saying. Unfortunately, there was that one who you could tell was not interested. It happens that way sometimes.

The 3 asks

The first ask dealt with Step Therapy. We were asking them to Cosponsor the Safe Step Act. This would allow a doctor and patient like me to choose their next medical treatment. The insurance company would not be able to say no and try to push another medical treatment that is cheaper and not in the best interest of the patient. Many states have enacted a Safe Step Act. This would be on the federal level that would also cover patients that are on Medicaid and Medicare.

The second ask was again asking them to Cosponsor the HELP Copays Act. Again, the insurance company was at the forefront of charging patients with copay accumulators which is like double dipping when a patient gets Patient Assistance from the drug manufacturer, but the insurance company also bills the patient again for the same amount.

The final ask dealt with asking them to provide $6 million for the CDC Chronic Disease and Awareness program. This would help educate doctors about psoriasis which is very much needed since so many doctors know nothing about psoriasis.

My take on the meetings

I believe there is reason to believe that the Safe Step Act will be included in a bill this year. It almost passed last year. With the HELP Copay Act being so new and a bit confusing I am not sure much will be done on that part at least for now. The CDC funding I am hoping gets done.

We as a community deserve to have doctors that understand psoriasis so they can better treat us as patients.

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